HELP FOR PARENTS OF CHILDREN WITH ASPERGER'S & HIGH-FUNCTIONING AUTISM

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Asperger’s Kids and Problems with Disruption of Routine

Children with Asperger’s (AS) and High-Functioning Autism (HFA) tend to crave sameness, despise change, become upset when there is a break in routine, or experience a “meltdown” when it is time to transition from one activity to another.

Among these “special needs” children, there is a propensity for doing - or thinking about - the same things over and over, because doing so brings great comfort (e.g., repeatedly lining up toys in a certain order). Unlike “typical” children who may, for example, experiment with lining up train cars in a variety of ways, and move them along the track once they have decided on an order, a youngster with AS or HFA might have only one acceptable order – and have a temper tantrum if a single car is moved out of place.

Many children on the autism spectrum have deep-seated “rituals" where certain things MUST be done in an exact way every time. For example, (1) “Dad must hand me the green towel with the frog on it,” (2) “I must step out of the tub onto a dry towel lying on the floor,” (3) “Dad must pull the bathtub plug,” and (4) “He must dry me off starting with my feet first.” Heaven help dad if he pulls the plug out of sequence or if the frog towel is in the dirty laundry. In this happens, the AS or HFA youngster can fall to pieces, insisting that the tub be refilled and the entire sequence be done again, this time in the correct order.

One expert on Asperger’s, Tony Atwood, describes how these rituals can become more and more agonizing:

"The bedtime routine may have started with only lining up three toys, but becomes an elaborate ritual where dozens of toys have to be placed according to strict rules of order and symmetry. When a journey to a destination has followed the same route several times, there is the expectation that this must be the only route and no deviation is tolerated."

What drives this incessant desire for routine? Maybe it’s a form of control, or a way to cope in an unpredictable and frightening world. In any event, the insistence on sameness is unmistakably there.

The strong need to avoid the disruption of routine can make a child with AS or HFA look very rigid to the outside world. Parents – and even siblings – can feel held hostage to certain routines or rituals, dreading the meltdown that will ensue if they interfere with them.

This inflexibility can have other social implications, too. For example, the AS or HFA child may become extremely rigid regarding rules, and want to help enforce them to the dismay of their friends and classmates. The youngster may try to “script” the play of other children so that some pretend scenario is acted out exactly as he or she pictured it. This resembles the “lining up toys” behavior, only now it is peers and their behavior that the youngster is trying to put in order. If the other children are noncompliant, this may lead to a tantrum or meltdown. The give-and-take necessary to play or interact with peers in more complex, mature ways is hindered by the AS or HFA child’s strong need for sameness.

Researchers have demonstrated that the tendency to have rigid routines, the propensity for having a “special topic," and repetitive sensory and motor behaviors (e.g., stimming) often occur together. Whether these various ways of being “rigid” are necessarily connected in some way (neurologically speaking) is still being debated.

The good news about the AS or HFA youngster’s strong desire to avoid disruption of routine is that it can be relatively easy for parents to respond to. The vast majority of children of all ages function better with structure, routine, and predictability in their life. Kids on the autism spectrum simply take it to the extreme and have difficulty adjusting to change.

If your youngster has trouble managing his mood and behavior when changes in his daily routine occur, try to provide him with as much predictability as possible. This can be accomplished by creating a highly structured environment where daily tasks take place in a certain order and things are physically in order. For example:

Bulletin boards with individual cards for each task that you can move around with pins, calendars you make on your computer, or dry-erase boards will make it easy for you to post the changes without having to recreate the list every time there is a change.

Lists, charts and calendars on the wall help your youngster see what will happen each day.

Warning your child ahead of time of upcoming changes can help prevent upset, or minimize it.

Is there ever a time when you should you step in and stop your AS or HFA child from engaging in his or her repetitive routines?

The answer is often that these behaviors are a problem for parents and teachers rather than the youngster herself, who is very content to be preoccupied in these ways. Thus, it is unlikely that your youngster will want to change her behavior. The rules of thumb when making decisions about whether or not to intervene or change routines and rituals are to ask yourself the following:

How much of a problem is it – and who for?

Does the behavior endanger my youngster or others?

Does the behavior increase the likelihood of social rejection or isolation?

Does the behavior interfere with other enjoyable activities or school work?

Will the behavior be acceptable in 5 years from now?

Treatment—

An effective treatment program for rigidity and insistence on sameness actively engages the youngster’s attention in highly structured activities, builds on his interests, offers a predictable schedule, provides regular reinforcement of behavior, and teaches tasks as a series of simple steps. This type of program generally includes the following:

cognitive behavioral therapy, a type of “talk” therapy that can help the more explosive or anxious kids on the spectrum to manage their emotions better and cut back on obsessive interests and repetitive routines

parent-training and support to teach moms and dads behavioral techniques to use at home

social skills training, a form of group therapy that teaches AS and HFA kids the skills they need to interact more successfully with their peers

specialized speech/language therapy to help kids who have trouble with the pragmatics of speech (i.e., the give-and-take of normal conversation)

Because change causes anxiety in young people with AS and HFA, they will want to live by rigid rules that they construct for themselves. One of their main rules goes something like this:

“My routine must NOT be disrupted, and involves X, Y and Z. Each time I can do X, Y and Z – in that order – my life has some predictability. When I don’t have this predictability, I feel anxious, which is a very painful emotion that needs to be avoided at all costs.”

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